In defence of self-diagnosis

By Emma Simkin

CN: suicidal ideation, psychosis, PTSD,

stigma, diagnosis, doctors, anorexia,

bipolar

I’m on my way back from lectures and I’m hiding in a bush. It’s not a particularly comfortable bush and I’m getting rather muddy, but I need a hiding place from all the people who are trying to kill me. As I lie here, peering through a gap in the leaves to see if an assassin has followed me, it is starting to dawn on me that something isn’t quite right with my mood. Diagnostically speaking, I have bipolar, but I haven’t yet been diagnosed.

In the back of my mind, I’d known for quite some time that I was ill, but I’d been finding it hard to reach out for help without self-diagnosing. It’s hard to explain grandiosity, racing thoughts and elated mood without referring to bipolar disorder, but I hadn’t seen a psychiatrist yet and I was terrified of self-diagnosis. Articles on the internet had taught me that it was selfish, that it made fun of people with ‘real mental illness’. With no diagnosis, I must have a fake mental illness. If I self-diagnosed, I would be a manipulative liar. Instead, I chose to keep quiet until I reached crisis point, which culminated in psychosis and intermission from university.

“I gave her another list with only one bullet point, describing what my brain was currently telling me to do: kill myself.”

When it came to intermission, I was forced to give an explanation of my symptoms. Sat round a table with various members of my college, I tried to explain what was happening without labelling myself with any specific disorder. I handed my tutor a list of all the things that my brain had decided I should do: discover the theory of time travel, actually time travel, email my lecturers about my imminent discovery of time travel, have lots and lots and lots of sex, run to Wales, stop eating, steal things, and discover the Theory of Everything. I explained to her that my mood crashed and I ended up hiding in a bush.

I gave her another list with only one bullet point, describing what my brain was currently telling me to do: kill myself. I didn’t use the words that were on the tip of my tongue, the glaringly obvious explanation for the extreme mood episodes I’d been experiencing since childhood: I have bipolar disorder.

I was reluctant to self-diagnose as bipolar, but the conversation with my tutor would have been a lot easier if I had. Without a diagnostic label, they were confused by my experiences. They didn’t want to use my current symptoms as a reason for intermission because it was too ‘complicated’. Scared that I wouldn’t be allowed to intermit based on some technicality, I opted to use my known diagnosis of PTSD. At the time, my PTSD was largely in remission, but because I felt too ashamed to self-diagnose as bipolar, I opted to tell friends that I was leaving university because of PTSD. To avoid the shame of being called a liar, I lied; self-diagnosis is often equated with lying, but it would have been far more honest if I just told people ‘I think I have bipolar’.

“Without a diagnostic label, they were confused by my experiences.”

The mental health community are often against self-diagnosis, but they seem to forget that it can take years for an official diagnosis to come through. In my case, it took over 8 years. To be diagnosed with bipolar meant that I needed to be taken seriously, which was very unlikely to happen until I reached crisis point. I tried to seek help without self-diagnosing, but I was dismissed time and time again. As a hypomanic fourteen-year-old, I told a doctor my mood was ‘too happy’, and was told that teenagers often have mood swings. As a hypomanic first year, I told a male doctor the same thing, and was dismissed because ‘females often have strong emotions’. On my third trip to the doctors, I came prepared with a self-diagnosis and an arsenal of mood charts to back up my case. Walking into her office, I slapped down my mood charts and announced ‘I think I have bipolar disorder’. I was finally referred to a psychiatrist and was diagnosed with Bipolar 1.

Diagnosis is wrapped up with privilege. If I had been a man, I wouldn’t have fallen under the emotional female stereotype, and my mood episodes might have been taken more seriously – the probability that a woman with bipolar will fail to be correctly diagnosed is three times the odds for a man. If I had been an adult, I might have been more assertive without coming across as disrespectful. My lifeline was class privilege – my family has private health insurance, so I’ve been able to see a private psychiatrist until I switch over to the NHS. It’s been 5 months since my referral to an NHS psychiatrist, and I still haven’t got an appointment. With severe mental illness, five months could be life-ending. My privilege afforded me a diagnosis, so I didn’t need to continue to self-diagnose to offer an explanation for my behaviour.

I’ve had to self-diagnose for other disorders too. The waiting list for eating disorder services was far too long, so I self-diagnosed as anorexic. On the verge of organ failure, I didn’t have the luxury of time to wait for an eating disorder service to validate my sickness. Instead, I self-diagnosed and typed into google scholar ‘Anorexia Nervosa nutritional recovery’. I downloaded meal plans, and attempted to stick to them. I shared my self-diagnosis with my partner and friends – without their support at university, I wouldn’t have been able to stick to my meal plan.

Without a self-diagnosis of anorexia, I wouldn’t have received the emotional support I needed from my family and friends. Without a self-diagnosis of bipolar, I wouldn’t have been officially diagnosed until my condition worsened to the point of eventual hospitalisation. I’ve seen a number of articles bashing self-diagnosis, but I honestly wish I’d done it earlier. I might have got a referral to see a psychiatrist sooner, I might have received greater support from university, and I might not be suffering to the extent that I am now. Diagnosis and privilege go hand in hand, so when you are arguing against self-diagnosis, you are often preventing marginalised people from using the only option they have available to seek support and summarise their mental state.

I recently read an article that started with the words: ‘The average person wouldn’t say they have cancer and then ask for support from friends and family without being diagnosed. So why is it socially acceptable to do this with a mental illness?’ I’m not really sure what this point is meant to prove. It seems clear to me that the average person with a physical illness will self-diagnose at some point, but they don’t receive half as much hostility for it. The average person with a physical illness will self-diagnose to friends and family – if they start to show symptoms, it would be quite natural for the person to tell loved ones that they think they have cancer. The average person might also self-diagnose to doctors. I know of cancer survivors who had to self-diagnose with cancer and pay for a private referral. If they hadn’t done so, they might not be alive now.

The argument against self-diagnosis appears to be another case of a disparity between the treatment of mental illnesses and the treatment of physical illnesses like cancer. With certain physical illnesses, people remember the difference between self-diagnosis and malingering. In the case of self-diagnosis, someone might go to the doctor with a lump on their neck, and tell the doctor that they think it might be a tumor – they are seen as being pro-active about their health. In the case of malingering, someone might claim to have cancer and fake signs of illness to feed off the concern of others, and would be seen as lying. Self-diagnosis is seen as expressing a reasonable concern, and malingering is seen as lying.

“Marginalised people shouldn’t be expected to sit around and pretend nothing is wrong with them until they finally get an appointment.”

A lot of the anger surrounding self-diagnosis of mental illness is actually focused on people who malinger, not those who legitimately self-diagnose. I’ve come across malingerers and even though I try to keep in mind that malingering is a sign of mental distress, it’s hard to deal with. Recently, a girl from my old school claimed to have bipolar. It eventually came to light that she didn’t have any symptoms of bipolar and wasn’t even aware of what a hypomanic or manic episode was. I’m not even sure she knew what bipolar was, because she’s since claimed it has been cured by running – pretty impressive considering bipolar is a chronic mental illness. My point is that malingering, although similar, is not self-diagnosis. The girl I know did not really believe she had bipolar; she wasn’t truly self-diagnosing, but just wanted to appear like she had the disorder. Self-diagnosis does not make someone a malingerer or a liar. People who self-diagnose mental illness are acting for the same reasons as people who self-diagnose cancer or diabetes – they are looking for treatment when they self-diagnose to doctors, and looking for support when they self-diagnose to friends.

It’s worth mentioning that self-diagnosis isn’t a substitute for a psychiatric diagnosis. There is a high possibility of misdiagnosis, often due to common misconceptions about how certain mental illnesses present themselves. Recently, I was asked a friend what mental illness she thought she had before she was diagnosed with bipolar. She originally thought she had schizophrenia because she hadn’t realised that bipolar can include psychosis. People sometimes get self-diagnosis wrong, and while psychiatrists aren’t infallible, they are less likely to make mistakes because of a greater range of experience and training.

Whilst self-diagnosis isn’t always ideal, it’s sometimes the lesser of two evils. It certainly shouldn’t be stigmatised when not everyone is lucky enough to receive an official diagnosis as quickly as they need it. Marginalised people shouldn’t be expected to sit around and pretend nothing is wrong with them until they finally get an appointment, and certainly shouldn’t face scorn for trying to offer an explanation in the meantime. So please, stop implying that self-diagnosis is a sin. It’s not some self-centred lie; it’s a means of self-help for those not privileged enough to have received a diagnosis.

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4 thoughts on “In defence of self-diagnosis”

Thanks for writing this article and sharing your experiences – I’m glad you have begun to be taken seriously, and honestly this is one of the more nuanced articles on self diagnosis that I’ve seen, so I enjoyed reading it!
I guess there are a couple of small points I want to raise given my own experiences.

Firstly, I agree that what people call ‘self-diagnosis’ encapsulates all kinds of behaviours, undertaken for all kinds of reasons, and it’s not remotely helpful to give them all the same label. Personally I actually have a narrower conception of self-diagnosis than you, I think – I don’t consider someone saying “I think I have/am [x]” self-diagnosis at all, so much as…questioning, I suppose. To me, self-diagnosis is actively asserting a diagnostic category as applicable to oneself, and obviously there are lots of instances in which that’s acceptable, even encouraged. People are asked to stay away from GP surgeries and treat symptoms at home if they have certain viruses, people with mild-moderate depression or anxiety are often asked to self-refer to local psychological services. For those conditions that aren’t seen as so straightforward to identify oneself as having, I think doctors definitely need to be more understanding of the reasons why people might come to them with the possibility of that condition in the first place – I have known doctors dismiss people who come to them saying ‘I think I have [x]’ apparently without paying any attention to the reasoning that person might have, which I think is ludicrous, and I suppose makes it understandable that someone might feel the need to present a list of symptoms and just hope the doctor is on the same wavelength as them. It’s absolutely the reason I avoided seeing my GP about an autism assessment for a long time, because it seems so common for people to think any mention of a diagnostic label, no matter how tentative, counts as self-diagnosis. Anyway, my point here is that I think people talking about self-diagnosis need to be more explicit about what kinds of behaviours they are and aren’t talking about, which I think is pretty much the same as you were saying, even if I carve up the territory slightly differently?

Secondly, I do feel the need to bring up the mental/physical distinction you invoke. I don’t think it’s nearly so straightforward a dichotomy, and claiming that psychological conditions are overall taken less seriously than physical conditions skips over a lot of issues. For one thing, it depends what you consider a psychological vs a physical condition, and an issue some people face is that patients and clinicians might have different opinions about that! I mean, it’s becoming increasingly common to invoke the brain in explanations of conditions considered primarily mental (as you do yourself, I think? – I don’t know how literal your brain related language is intended to be. Given the brain is undeniably a physical structure, what does that say about our understanding of the mental? On another, less philosophical note – even for conditions that are more straightforwardly physical, it’s still very common for people with physical complaints to be dismissed by doctors. I have a literal hole in my spinal column and a (benign) tumour on my back that have been present since birth, and it took 6 years for a doctor to actually listen to my parents and acknowledge that this Very Physically Obvious Thing was an actual medical issue that (a) had a name, and (b) they could do something about. I actually have ongoing issues with this that I have been battling people over for four years now, for various reasons. A family member kept going back to the GP with what she thought might be cancer. She was dismissed for years, and they only realised that it was, in fact, cancer, when it was stage 4 and too late to do anything about. The aim of this isn’t to make light of your own experiences (e.g. if you’ve had much better luck going to a GP for physical issues than psychological), and I think some psychological issues are taken less seriously because of a lack of understanding/’visibility’, among doctors and the wider public in general – but this is definitely not limited to psychological issues (or those deemed psychological, whether that’s the best way of thinking about them or not).

Anyway, I hope this doesn’t come across as overly negative – as I say, I actually liked your article, which is why I wanted to engage with it. I agree with your overall message, just had some thoughts about some of the finer points. Once again, thanks for sharing 🙂

Thanks for the comment! I really agree with the points you’ve raised, particularly about brushing over the nuances of mental and physical health. I actually had a very difficult time trying to receive a CFS diagnosis, as well as food intolerances. I guess it’s the illnesses that are more ‘visible’ that tend to be more easily diagnosed? Really sorry to here about your experiences. I also found the distinction of questioning and self diagnosis a really interesting point. Thanks for your comments!